Bladder Cancer

Hi Heart:
Many thanks for your meassage about the Bladder cancer, and the prostate.

I am considering the possible directions to take, with this bladder cancer.

Does your Dad have a problem with controlling the urination, day or night time?? How long ago was his bladder and protate removed, and the neoblader installed??

This sure is scary time for me. I had the tumor (in bladder) removed 12-1-05. The Cat scan of the bladder (done 2-13-06), came back Normal (the tumor had not grown back), but the Urologist said that the cancer could "still be there". Guess I just don't "follow" all the medical reasons that the cancer is probably still there after the removal of the bladder.

Also, did you folks look into any Alternative cancer treatments?? I live in Eureka Springs, Arkansas, and I am not sure where all the "experienced", bladder removing Urologists are located.


Many thanks, Donald P.

I received 2 messages, with the exactly the same "text". One from Heart, and one from Debra B., so I will also say Many thanks to Both Heart and Debra B. Respectfully, Donald P.

Here is my personal feeling after reseaching for many months the alternatives and outcomes my dad had as options to him. If you catch the cancer early -What stage are you and what grade was the tumor? Your chance of survival for a high grade superficial trumor for ten years after an RC is 85-90%. Dad has full funtion of his bladder during the day and also at night if he gets up every three hours. He had his sugery the first week of Oct 2005. The surgeon who performed the neobladder does about three or so a week. That is the most important peice of info. Go to a surgeon that has done over 100 sugeries plus! We were talked into something new and not proven the robot and as a result suffered i believe for it. My advice is do what is proven unless the options arent on your side. If you are a candiate for this sugery and have a good potential of life expentendancy than dont chane the proven!

Good luck,
Deb

There is a urine test that is pretty accurate in dectecting wheter or not there are cancer cells still present and wheter your genes are not functioning well. my dads genes on this test were changed eventhough there wasnt cancer present in the biopsy. the doctor knew they were coming from somewhere and said its impossible to biopsy the entire bladder. this is the FISH test that you might ask about.

Hi Heart:

Many thanks for the test info.

Could you possibly give the name and location of the Dr. that treated your Dad??I will have to make a trip to "somewhere", from Northwest Arkansas , where I live.
Does your Dad have full control of his urine suppy, during the day , and especially, at night time??(with the neobladder)
I appreciate the information, and thanks again.
Donald P.

His name is Dr. Gary Steinberg from the University of Chicago. He is a "guro" in the neo-bladder area supposdley. He does have full control of his bladder and his nerves as far as he can tell. Until recently he was not well enough to consider sexual functions. We know others who have used this doctor and have had good luck but i will tell your the negative of unicersity settings. While the nurses have a lot of experience as do the doctors, you are at the mercy of the residents right after sugery. The surgeon himself doesnt do much after sugery except for major complications and routine visits. this doctor is not the best for bed side manners either but i think hes brillany so thats the trade off. my suggestion is to get two opinons from outstanding doctors who do this all the time, if you can afford the time and expense. go to the university of chicago web site http://www.ucurology.org/urologicCancer/bladder/index.htm

hope this helps!

the robot on the prostate is the standard of care and has great results while the bladder is still in its infancy stage. having said that the research i did on outcomes said that the university settings while they are a pain to deal with had the best outcomes for bladder control and mortaltiy rates. my dad had great bladder control starting around his third month. it does take a while to get used to and is very scary but its now a wonderul invention (neo-bladder).

Donlad,

One more thing it is imperative that you move as quickely as possible becasue there is a window of opportunity to have the neo-bladder and once its gone its too late. i would make an appointment with a doctor of choice asap. if you have any trouble getting in to see our doctor and thats who you want to go to let me know and ill try and help.

Hi Deb:
Many thanks for the additional information. I will consider "all" that you have said. And, if you "think of something to add", please do it!!
I am digging into "treatments", as deep as possible for a layperson, and feel like a Beginner.
Again, Many thanks. Donald P.

Donald,
My husband is having the same feelings you are about the bladder removal being overkill. He had the small tumor removed from inside his bladder last November but the urologist did not feel that he got all of it, that it was into the muscle wall. He has just finished 3 rounds of chemo with cysplatin and gemcitobine last Thursday. He has been so sick since then, I cannot even describe it to you. He has not been dressed or out of bed since then. He cannot make it to the bathroom unless he crawls on all fours. He is dizzy and weak, can't hear or see. The dry heaves finally let up a bit today, but he has not eaten anything much at all. Today a sandwich and ice cream, that is the most he has eaten in a week. We are supposed to book his surgery for a month from now to have the bladder removed, but I wish there was a test that showed if they really need to or not. As you say, maybe the chemo was the worst, and the surgery will be a piece of cake after that. We are from Canada and there does not seem to be much of the neobladder thing happening here, not from the doctors we've talked too. He will probably opt for the bag if he can even bring himself to go through with it. I am taking him to hospital tomorrow to see if they can give him a blood transfusion to raise his hemoglobin, maybe that will help him to feel better faster.
I wish I had discovered this site sooner, it is very helpful